Join our storytellers on this week's Moth Radio Hour as they experience the unexpected twists and turns of life. From a Russian bathhouse in New York City to a lonely road in West Virginia, these stories go places you won't see coming. This episode is hosted by regular Moth host Jon Goode. The Moth Radio Hour is produced by The Moth and Jay Allison of Atlantic Public Media.
Hosted by: Jon Goode
Storytellers: John Mack Freeman, Aydrea Walden, Jon Goode, Sofija Stefanovic, Ijeoma Oluo
This is an unofficial transcript meant for reference. Accuracy is not guaranteed.
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to the unique wonder of your life, build your confidence and find your story. All country will run every Saturday or Sunday for seven weeks, starting April second, to apply Is it the moth dot, Org, slash all country the deadline to apply is March thirteenth. We hope to see there from Pr Rex. This is the more ready LOS Angelos, John good Luck, start by asking you a question: have you ever had a week a day or even just a moment? They took it.
Earn for the better the worst they just didn't see coming. Maybe you found a scratch off, take it on the street and it turned out to be a winner, and perhaps you return your guard to the mall parking lot discovered at your car was gone and only your aunt tat gap device was left in the parking space. I once went to buy a t, shirt and a tourist market in Saint John and ended up in a bar in a forest sitting. Next to a pig and Saint Croix, life will certainly take you to some wild, interesting and complicated placed in this hour. We have five stories, were things take an unforeseen turn for our storytellers, our first or comes from Sophia's to fund a bitch Sophia told this story where the apple is big and the pizza slices, our even bigger New York City at the housing works.
Store, shut out to double in Y, see our public radio partner in the city. They never sleeps here Sophia LAB at its two years ago, and I have just moved to New York and I'm feeling a little bit lonely and weird. But I'm sorry, because my friend Hannah Come to visit me from Australia and it's her birthday and I'm taking her to this russian bar. How's, that I've heard about utter really care about both houses, but she does and Sir, where there and at the reception and we decided we just gonna go and have a little relax and then go on and have lunch somewhere else and as I'm I'm paying, I say that this is like little materia area attached to the reception, and is this delicious eastern european food and theirs, A woman sitting eating some secure and lives call his Sonia for the purposes of this story, son you're sitting there in a variety of aiding stew,
looking over it. Ass. An is the reception as to selling the tickets. Sonya gets up and says to her in Russian. Let me take care of these astray lions now, even though I sound like an australian I am actually a serbian is living in Australia, but we, I also speak a slavic language, so I can understand the route words. So I could handle, and what she was saying. Sir and so she's two species is, Actually, you want a message and maltreatment and it's going to cost these much more, and so I say nine, I actually we just want to go in to the bath house. We don't want any extras and then to give her a clearer that I'm onto her, I say likes but Ciba in Russian does not get a clue c c takes us through to the bottom. Changing room area is women's only data. We don't need to weigh swimsuits and she gives us these towns that I like about the size of a piece of tourist, so you can even the cover like the front or the back. But not boy
it gives a very than she led us into this area and is the Bob Housing area, and it seems like familiar in a kind of bad way from my socialist yugoslavian childhood reminds me of like some subtle Herbal Municipal Swimming Pool, ITALY's like crack tiles and is dirty water running down looking around and is like lights that have gone off in places and these women in the shadows like washing each other, with tiny bit sort and Hannah looking around. As he says, all these seem so authentic and thy desire. Fine, I'm not gonna, say anyway, I'm going to ruin the day so already like in a little bit of a bad married. We going to me in a bad mood, swings fine, we're going to the steamer room and we sit there in the darkness with other peoples like sweat, falling on us and Sonya walks in and she says hey it's time for your message and I say nor we're not getting the message you're getting the message and we're gonna pay late on nice. They, when we're, not we're not getting the message. I kind of fuming a little bit. She leaves.
I decided I'm too hot NASA, I'm going back into the main area. I leave honey in the other people, sweat and I see Sonia standing there. She standing next to a colleague of hers sorry she's naked, now we're all naked. she was wearing a right before. But just like remember that from now on, everyone is naked because rain and so she standing there with their hands on her heaps and next to her as a colleague also with their hands on her heaps. They both he's kind of short in Greece in european women, and She said to her colleague in Russian: hey they booked in four two messages, but now they cancelled on us and I and she calls are- can you believe that Magdalena and I say, hey in English- magdalena- do not believe that she's lying, we didn't know Looking for anything. Yet still, this person doesn't understand that I can understand what she sang it is building on the australian He's trying to rip off so Magdalena this kind of shrugs than she picked up his gigantic branch and goes into the same room where I get to be caught.
I'm like I'm, not I'm not going back in their sorry. I see this sum. I see this a row of showers along the wall and I decide thing is. I have nothing else to do and it's a kind of tens naked situation I'm, just gonna go and have a showers. I go there showering and Sonya matches up like seventy nine. you mean, turns off the water and she says you are showering for too long come in Heaven. I thought- and I was angry- I'm really when I'm trying to dry myself with his tiny talented furious at the same time an end, I'm looking at and she's looking at me, and I realise that I'm not really angry, because she's trying to upset me and she's following me around the bath, but I'm also angry because I'm kind of new and lonely here, and I recognise in hers something that kind of familiar and it's something that reminds me a little bit of my horse and of my family of and where I come from, and I want to be part of
a gang only part of a team. I wanna hurt, except me and kind of recognize me the way that I recognise her, but she doesn't she's just standing there and she's angry making her hand into like this, that she standing that, because you view is that the message and I'm to think to myself and I think I might have like a fight with this small elderly Russia and we're both naked and I looked at her and I kind of size, Europe, and I realise that, even though she's quite a low shorter than me, she really really strong and also she has like a horn town advantage on the wet tiles decide. I'm not gonna, take the chance but stared. I do like my to say my last little stand and I say new jelly massage, which means I do not want a message in my language, and I hope that she's going to like make the connection and
I want you like in my mind I, like March out with dignity, but because of the tiles and just really slowly working towards the changing rooms, and then he I get dressed. I have to sit out there in the cafeteria waiting for China and as I'm waiting, I kind of can't resist the smell of the delicious eastern european food. So I autism stew and I'm sitting they were this to join. And some some heaps does walk in and Sonya comes out in Harare been. She starts to up seldom You gonna glances over me and I'm just sitting there with moisture, and she gives me this like the tiniest kind of nod of acknowledgement and cigars. You laws like the hipsters into her head Dan, and I can't help but kind. mild myself and I eat this chew and tastes a little bit like harm
Thinking that was to be ass, the fun of it so fear is a writer in the hope that this EU nation, a celebration of immigration, bars her memoirs. Miss Ex Yugoslavia is while growing up as an immigrant kid, while Yugoslavia COM, I'm not getting a massage but still being robbed. The wrong way asked Sophia. If she has returned to that for any Beth House since there's no way I was struck by the line is so story the sting tasted like home. So I asked her if she had to give us a recipe for what home taste like what would be in that breast. She said chicken and lose personally. Man would probably be pork, chops, applesauce and purple,
coolly, not great, but the most delicious. Our story with an unexpected twist, comes from the place where I hope the lab mov story, slams call home and you can get living happily, chicken wings, Brad Hard all flat with extra sauce day or night Atlantic Georgia, our storyteller John MAX, is a librarian in the suburbs of Atlanta and because this the radio. You can't see him, but trust me. He has the best hair in the game: the board man and he routinely fills me with hair envy, Is that even a thing here envy? Nevertheless Jai MAC Freeman says that he's been collecting stories from people in his life for decades? Well, I can't wait to share this one with you and you didn't even here
the weak decades to gear. Here's John MAC, Freeman LAB at them all. My grandmother has six months to live she's dying. then in and out of the hospital all summer, but now she has a cancer whose name is too long and complicated. For me to remember: and so now we are staring at a ticking clock, and that is why everyone who can is flying up the highways of the Appalachian Foothills for a birthday party. This my family doesn't really throw birthday parties, but we know that we have to do it now or we're never gonna get the opportunity. and I M nervous about going because I used to spend a lot of time with this part of my family. I would spend a week up there every summer, but I've seen them in over a decade and they are exactly the.
People, you think, live in the appellation foothills. They are conservative, redneck blue collar. All of the above I am a city, five pinto Commie Liberal, who is bringing my husband to meet them for the very first time. And I am nervous about how this is going to go but my mother asked me to come and see I go get out of the corner and Conway Twitty is blaring from the back yard. My mother meter, at the door and we walk out back and there are forty or fifty relatives in these parts of folding cheers around the backyard with paper plates in their laps, there's a pool let nobody is using a bar, that's unattended and in them it always my grandmother dancing her youngest son David to hello, darlin. And everybody is watching and authorities pretending like they're, not watching and their furtively recording with their phones but pretending like they're. Not
everybody knows. But nobody wants to admit that this is probably the last time she's ever going to dance. And the dance ends and the spot next were opens up, and so I sit down on the concrete and she looks good. Her here has been done and they saw cross around her face is wearing a new outfit for her birthday and but its Lou to hide all the ports and the wires and the tubes, and she takes The oxygen tube out of her nose and we start talking and she asked me about the house. I just bought and I asked her how she's enjoying the party and we're making small talk in a situation that really doesn't need small talk and she Causes for a second, she turns to mean chagos. You know I'm fine with all of this. And she sucks man I mean
not see that my grandmother very often, but we share one thing more than anything else. We have a blunt attachment to the truth, and so, whatever her life has brought her her eight husbands running over the fire, living in a school bus. This woman is the kind that they don't make any more and this is what she wants to talk about this ticking clock. That's on her life than I wanna hear what she has to say. And so she says, I'm find this is just a part of life, and I know that I will be ok But it is so painful watch and how much pain your Mama and David around, and I try to think What do you say to the dying that don't need your pity or your platitudes, but where I can come up with something to say another. Her family member pushes their head and Gus? Do you want to pay. the cake in that tone of voice people use with the elderly that they think are feeble, and I want to pick this woman.
for all her into the pool taken all because my grandmother is not feeble. She dying, but she is still here Older relative started, a part is the sun goes down, and this party that has felt very much like awake is turning into a little bit of a hoot nanny, There's a scavenger hunt for the missing vodka people are doing Furtive shots of tequila in the kitchen, my uncle's ores, giving up their shirts and doing cannonballs in the pool. My answer doing a ban white. Lady line dance to the wobble off to the sides. And my mother is pointedly taking me and my husband to meet everyone, daring them with her steely gaze for anyone to flinch. The phrase- and this is Max husband, Dale. And I dont know what I expected, but nothing happened, because my Came omega hat wearing uncle grabs, my husband into a bare hung. It says that it's so nice to meet him and that we don't need to be
Strangers and the next time we're up that way. We need to stay with them. and I'm never going to understand these people. But somehow my baggage fits here. I know I need to get on the road I am working in the morning and I can't stay. I know But all things come to an end, but I back outside one more time and sit down look around at my family. my grandmother sitting in the middle looking out for kids and her grand kids and her great grandkids, this clan of factory workers and teachers and light. Koreans and storytellers and hunters and nurses and business people, and some into the future and into the future. We are all so different, but differ it's just a way that we are saying that we are so unique and soon
equally suited for one another Look at my grandmother sitting in the middle of all of this chaos. and somehow she is at peace, and I find that quite unexpectedly. So am I thank you that was John Agreement LAB at centre stage. The eight year was slow to Armenia, partner in Atlanta, JP being I asked John Mcafee and his husband ever get a chance to take up his golden holding invitation to stay over. He said they ve only been up for day. Trips does the party, but they are not opposed to the. I also asked him to define, but those of us they may not know what a nanny is. He said to quote: Buffy the vampire Slayer, it's a hold out a hoop. What
little bit of nanny John MAX grandmother passed in December of twenty nineteen. He says she was one of a kind that is shortly after that party. He added the wobbles to a spot, a family, every time it comes on John Backface. It makes me happy and reflect in a little safe, which is never would have thought that song would do to me probably promulgated becoming up demanded, brandish trucks in a lady to teach people to drive with them off radio. Our continued
the most radio hours produced by atlantic public Media Woods whole Massachusetts and presented by p r exe.
This is the moth radio, our from Pr Rex and I'm John good. Our next story of the unexpected comes to you not from Louis Ville, not from Louisville but from Lobal Kentucky and Mohammed Ali Centre. It involves a car breaking down, a writer gettin picked up in an unforeseen turn of events, and it's all told you a John Good wait a minute. That's me, part of being a horse or the more lax is sometimes having to tell a story yourself. So here I am lab at more, though do you mind if I tell you a quick story for my life, so in this life of mine, I am hired mainly a lax about on the road and perform poetry. Colleges right seems like a great thing for someone to hire you to do.
They do they are committed to it, and so I was high about his school in West Virginia anybody here from West Virginia fantastic. This is gonna work, I'll, just user, don't listen! Our just get he's gonna work, altruism so as high by the school in West Virginia and if you're unfamiliar West Virginia. I will let you know that West Virginia is not No, of course people of color is not what they lead with.
in that light. You know West Virginia also West work on those that they do not out there and spoil alert normal black, so no shocking right. So they wanted it to come out West Virginia due to show this college they sent the check. I cast a check. I think it s a short, so jump in my car and I'm driving to West Virginia nobody's going well across the West Virginia state line in sovereignty. In the back of my mind, the tune of dueling banjos begins to play. I ignore the keep on drugs and about ten fifteen miles later, my my Indian in the car, so the lay down the most wonderful hip hop b is like, which is wonderful, if it's a great sorrow, but now good a so our poured over to decide about poor What does that mean? I can't over over the sack of allows power, and then I did, which is supposed to do as a main pop, the hood
about the other. The marriage is both a partner who now I don't know anything this going on under the hood of a girl s father. No, they have their own wheels. Making this thing go, I don't know, but they say you spoke the Popular Party, so I walked around I lifted and I'm not a mechanical genius of any sort, but the spark look. Why was on fire? and I say that's the problem right there. It is so I got a fire extinguisher put it out. I looked up. The sun was getting low and discard. Dueling banjos was getting louder right around in a truck driver whose pulling by pulled by poured over here, hopped out classic doktor Atwater hat flannel shirt, some genes and boot became over. He said: hey body now said: hey buddy you they will cease to be the problem as a car broken. You don't mind if I look under the hood, as that, I think you have to. I think these are the rules.
So we looked at her. He sought at smouldering. The barbed wire- and he said that Japan, right. There now look at the both of US mechanical geniuses he's a way you didn't you body, so I told him the school I was going to. He says I know school, I'm driver I pass their school if you like, to give you a ride there, that's you if you are familiar with a genre, fail known as horror, but so many horror movie star with benevolent troika offers stranded. Stranger ran up the road, but the sun was lower dueling bangles, getting louder on. Ask the commission to take a chance, so the drop. We ended up the road and all is good. But like twenty thirty forty miles did you looks over. And he says hey Body and that's it hey buddy. He said
I don't mean to sound racist or not, and, as you know, if someone stars without all mean that now raises the next you're gonna hear the motor raises thing you ever since I was somewhat they them now, calling you stupid. They are they're gonna use, so is it by all means how racist or not- but I was this documentary on CNN call blackened Erica there was a black eye on their hopes that, and I swear you look just like their blacker and let me tell you too because I know to be true number one is all black people do not look alike, but the second thing I know to be true is, as it were so happen. I am the guide and hopes that thing off the end of it God at home that they know what he's there, get out
will not get out, but I, the guy that hosted that thing here Why not all believers, so we up the role we laughed with a good time we got to the school we jumped out would itself business stuff, I'm sure Texan, I'm, like you ve all believe it was a match up, the black eyed phronsie authorities take them back like ass, not Don Lemon but, as you know, I did think about. The person was obvious stereotyped faced with so many biases. The world to think about some of my own biases, some of the things that I have held onto maybe a bit too long and start deciding on some of the things that it was time to let go John, a one Wayne Awake Asian, be in eighty eight me. Is it me now,
needed writer whose most recent novel might is, has received seventy five five star ratings to date. Number one: on Amazon five weeks, I asked myself John, Why would you try to drive to West Virginia in a car that looks like it could use some lotion as a czech engine like this? These are so much did It's just thought of as a kind of night light they clearly has trouble getting to the local Kroger. In fact, I replied to myself, ignorance, when I call my mom and told her about what had happened and how I was rescued. Tee said: God looks out for babies and booms, she did not clarify which of the two.
Our next or a teller has written for Disney Netflix an Amazon she's. A former newspaper reporter was the hopes that the twenty twenty nebula wars and created the Webby nominated Jane, Austen, themed web series, black girl, in a big dress, and, as you will hear, she's also pretty good at parallel part. Here's Adrian want so don't think any of you know this girl but trust me when I say it was written curious. How rich Julia was her data can be and he was so gated. There were like a gate around every house. It was ridiculous how many horses, she had. It was ridiculous how role
lost her household staff while she could have like recruited the entire film the help before breakfast, and it was super ridiculous that I even cared about this in the first place, because Julia was a fifteen year old child and I was a thirty year the woman who really I've had my life together, I Did not have my life together and that's all. I knew that. So usually in the first place, because, thanks to a divorce and the recession, I had been demote. from living life with a normal respect for human being person and was now living life as a I first instructor I do not recommend living life as a driver's at instructor. First of all, there is a uniform, not the cool uniform, like doctors are astronauts, get where undecided Worthing. Being a driver's instructor is that you are being a driver's ed instructor and concern other was going wrong in my life. I probably shouldn't care so much about Julia's, except that Julia was both.
Breathing. I wanted to be when I was hurried and you're doing everything I wanted to do now. She was a ballet dancers. I was a kid. I loved bellies Tom? I too want to be a valid answer. But when I told my mom. I want to start taking ballet lessons. She told me eventually, I was too fat to be a ballerina. But that's ok is what people don't get skinny anyway, and why maybe an engineer like a damn, let me alone so not Lady Julia get to take ballet lesson, she had a mom who liked her. Juliet- We also had like three cars at fifteen and thirty one. I had a cars because my car had just been stolen, rent control, department, proteins, being the only member of that apartment complex, who was not also affiliated with the Kenobi Park. Alabama street gang came with. Some baggage
Julius has also had heat, and at the time I was like all around me of every night, because that was the only you told me. I could afford to turn on and I didn't think that I could dislike her any more until like december- and I made the mistake of asking her what she was going to holidays and she goes we're going to Hawaii. Why again socks I landed! my only nine you're so rights, meaning we can paradise. People who love you sounds of sounds absently horribly when breakable trail to Katy would drive a stick, but you can't say that to me: So instead I said oh, why will that sounds fine? What do you like to do there and she goes I've been so many times and even do anything anymore this ain't, your horrible human being? But you can't say that to a kid so stared. I said you're right that does sock one.
the new year any fun resolutions and she goes- I just hope. Next year is better than this year, nine you, she broke the boy from in care, because I've been going through a two books and she was gonna, be over this guy, like next semester by you, can't say that to do so, instead I said: oh, is it because of Michael and she goes that and I really hope my back it's better and then, told me about how she was almost paralyze, see us but the ballet dancers, Japan dancing Emily levels, and she was a little kid all in all on about all the practices and shows in the competition and also wonderful and then she said, talking about how that year, when you put it down with a practice, her arms and legs to feel really Tingley and they started burning and then some you can feel them at all. And how she are taking ibuprofen. Very it was so painful, so painful, shooting every prison like candy and friends was so people like that when help analyses are
wrapping ice, Baxter body all day, long that didn't help and how one day she lay down after a show to like relax, and you couldn't get up again breast fracture into vertebrae, the doktor ordered or off of her feet and out of the tissues probably forever, and she goes I don't even know what to do anymore. I don't really know who to be. I totally got that he's going to a big shaken up my life to the vote to her house and I looked at her giant mansion and our horses car than other stuff, and it was I didn't matter how much stuff she had or how expensive it was because you couldn't that one thing that made her feel awesome. It was pretty worthless, probation and say that to a kid. So instead I told her very honestly that I hoped that she had an awesome trip to Hawaii.
Thank you was easier. Warden laugh impose these east in LOS Angeles, California, what Casey our W holds us down, We see that shortly after she met Julia, she started working studios again and it has been just up and up from there. She said that she and Julia are no longer in contact, probably because Adra did her. Job and you will get learn to Dr Weir. She hoped the Julia is well. If she is dancing does she gets to keep going to Hawaii? Have you ever thought to yourself? I haven't May using story that I would love to share with the world. Well, guess what we read your thoughts and set up a pitch line? Yes, you can pick. your story by recording it right on our sight or call eight seventh. Seven dial nine month- that's eight seven seven
seven. Nine nine six six feet for the best pictures are developed for more shows all around around the World- we ve been to New York, Georgia Kentucky California, and our last stop is Washington State when the moth radio, our consent,
the demands radio hours produced by atlantic public media, in which all Massachusetts and presented by the public radio Exchange, Pierre Ex DOT, Org. This is the more video our from Pr Rex, I'm your hosting good now. Last story they takes an unexpected turn comes from Egypt, or do you she is lab in Seattle I didn't
Much of the letter when it arrived, I looked the plain white envelope from the blood bank and I figured it was probably just a thank you for donating cord blood from the birth of my first A few weeks earlier, I figured it would possibly say something like that. You fear lifesaving donation or maybe even a drama, Luella local hero. When I open the latter in the first line jumped out at me in bold print. It said it This is not about AIDS HIV now It was two thousand once we re still really in AIDS. Crisis but I thought it would about AIDS or HIV.
But now I was like, are you sure? Are you sure? Are you sure, but you know I kept reading and it wasn't about AIDS or HIV in simple text. The letter informed me that the blood I had donated had tested positive for hepatitis, see, and I should contact my doctor for more information about it. They, The letter is like what the as Hepatitis C but I figured it Polly, wasn't that big a deal I mean if it was someone would call right. I did make an appointment with my doctor. Like the letter had said. And by the time my appointment came around, my doktor was able to confirm what my own internet research has shown, the tightest of blood borne infection acting millions of Americans Vietnam veterans, Ivy drug users, people co, infected with AIDS and HIV
people who had received blood transfusions before testing became available in the mid nineties, healthcare workers, Tax, your liver it causes. the roses, liver cancer and often death. So I guess it was a big deal. I was into a specialist for barrage of tests. I waited agonizing days to find out if my new born baby I've been infected with this disease. I have just discovered. I had I held my mom's hand as I sat through a liver, perhaps he so painful that I went into sharp. I was Twenty years old, I was, a baby myself and I had this brand new baby and I was trying to figure out why my world had just turned completely upside down. After all of that has side saddle, own with the specialists and she reconfirmed my diagnosis. Yes, I had this disease. I Powell
had it my entire life. She said it was most likely. I had gotten it from a blood transfusion shortly after my premature birth, but there was nothing be done. Treatment at the time was really expensive, often more deadly. The disease itself and only had about a twenty percent chance of working, I wanted to argue with her and I have gone this pain all these tests and I wanted to be cured. But she got me off and she said Do you have any to take care of you, anyone to take care of your child? do you have any one? Who can support you financially? If you can't work? I had to shake my had: no, I didn't baby and I was getting ready to leave a bad marriage. I never is alone, as I did at that moment. Well, then, I recommend waiting. She said I mean there's like
to be better treatments down the road and I don't think you'll die before them. I was sent home to deal with my new reality and dealt with it. The only way, I know how see I'm Hocker Amy, walking over share, so I just started telling everyone I was telling my friends I was telling my family. I was telling all black Highschool classmates. I was telling my co workers. I was telling my neighbors and there's a guy who is confusing. It was underwhelming, to say the least, but in stubborn, and also I really can't take a hint. So I just talking about it? one day, a coworker pull the side, a close. He made of mine and he said you have to tell each omit to stop telling people about her hepsey. It's not something. She wants people to know about it's a disease for dirty people,
See you know have see is a disease, you got it you use dirty needles or have risky sex. If you get it it's because you deserve it, an you deserve this aim. That goes along with it. I start talking to people about it for the next decade, or so I lived in fear. Fear that this disease would pull me away from my precious babies, but also fear that we found out and would be cast out, not only die, I would die alone. This fear was reconfirmed every Time I went to a medical provider when it just my status to doctors, nurses even Dennis they would all give me the same. Look and a few would even say it. You don't look like someone with Hepsey. but what they were saying was. As I didn't look like a dirty person, I didn't
like someone who made really bad choices, but they looked at me like that. Afterwards, and I wanted to show not me, no I'm a good person. I got this. Rare blood transfusion omen freely, good person, but never before used someone's drugs Street to determine whether or not they were a good person and, as a god as far as I know. I certainly never used anyone sex history for that. Service. about, to start just to save myself a little pain and reinforce that stigma. I really really resented the impulse for a few days in two thousand tat. Everyone was talking about Georgia, congressmen Hank Johns, He was talking to a Navy admiral about the possibility you have sending additional troops to Guam
Many fear that perhaps the added weight from the troops might be enough to capsize the tiny island people shared video of and her laughing hysterically, but I wasn't laughing. I was terrified I mean yes, I love laughing at Congress as much as any other American, but it had been revealed shortly after this video went viral that Johnson had long been suffering from have see and it had been a in his speech and cognitive abilities so He sat there wondering with that. Really would I be left with the inability to, actively communicate and be marked and laughed at by my Paris I sat alone in my apartment in the middle of night interest watch that video over and over. over four, and I cried
A few years later, it was announced that a new, safer and more effective treatment. Perhaps he was being developed. I said Google alerts bunch of research? I finally It's a secret hope that may be could be cured before anybody knew I had this is so Is it was more widely available? I made an appointment with my doctor. into a different specialists this time for the same tests. And largely the same result. Yes, I still was sick. More sick than they had been, but not very sick. This disease takes decades to kill but also like before there was nothing to be done there. no way the doktor said, like I had asked for world peace instead of medical treatment may explain these.
those are ninety thousand dollars. You have to be practically dying to be approved, come back in a few years. Now I personally have not died myself, but I it's safe to assume its, not fun but does firm is particularly awful. You die a scared and confused as poisonous at your If we would normally filter out impact your brain, you die yellow with jaundice, with your belly distended like your nine months pregnant you, drowning in your own fluids, and I needed to get closer to that. If I wanted to be treated and went home, and I cried for about two days, but I just got back to the light. I'd always known. I focused on raising my son's Ipod. os I started writing career.
I became known for my frank and opens style about in a really personal and tough issues. You know that walking over share thing but paid. Even though I was known for this, not once did it occurred to me, I about my have see and the more while no one I became for being open and honest the more terrified. I was that people would find out that I have been I it's kind of ironic that, as I began to be known for my wits, I, the dreaded at sea, brain fog with sat in a lot of people have been suffering this disease from a long time status. neurological impacts, my, anxiety and depression increased. My eighty de became completely unmanageable, and I couldn't remember words
I would still sentences for minutes that felt like where is trying to remember what I was trying to say. Reed anymore, I Read a single book in three years, and I was scared to tell anyone. But it wasn't until the physical attacks at in that region. I had to do something when my hair started breaking off and my joints hurting and I spent well too many nights on web MP saying why do my fee, which all the time last. I had to be honest. I had been too did for just about every other possible medical. For these elements, but I finally had to say to my doctor: I do think this is my hepsey. But my doctor, this is the same doctor. I had called fifteen years earlier. When I got the letter. I prepared for her to tell me there is nothing to be done, but instead she
lifted her. I perhaps, and she said why haven't we treated you for it. Notification of approval of my dream. It was really just this hilariously unremarkable is notification of my illness had been. I gotta call, eight hundred number and an automated voice says your prescription request has been approved. Thank you for doing business with us, and I was I honestly thought it was for a change in my eighty two. You methods I was like: ok, whatever It wasn't until the next day that I realized it might be for this treatment. So I called insurance company and I waited on. What for thirty minutes, while they looks rather records and finally a guy said: oh I'm seeing an approval for her vote at a really expensive matters, and I thanked him and I hung up the phone and I cried.
I cried more than I ever knew as possible. I cried for fifteen years of pain, amen, shame and fear that I was going to be free but that elation didn't last long because we live in the internet age and I immediately start googling. What's the worst thing that can happen to you? If you take this medicine, and I realize that well, most people or just fine, a not insignificant amount of people had really disastrous side effects. Some people even died and I was scared, but really I had enough. I lived with this disease alone. for fifteen years I was not chemicals, the treatment alone as well so, gathered up. Whatever courage I had left A did, but you do nowadays which has gone on Facebook,
They made video unaware, and stay at midnight. it's only and I Splain. What I had been living with and the tree I was gonna be undergoing and how scared I was, and then I just went to bed. The next morning when I logged on- and I realized that people weren't bring me they were in fact concerned. Loving and soon we really excited that I was gonna get the treatment I need it. I made it public, just like my fear of people's rights My fear of treatment was overblown as well. I was sick for one day and then spying. In fact, there is better, then fine I was thinking clearly then I had any years
and I was also seeing this disease more clearly, because what I came forward. Other people came forward as well people I had known for years so telling me about their moms, their dad's aunts and uncles, who had died from this disease People told me how long they had been keeping their diagnosis a secret one. Woman told- about how even on her moms despatch refused anyone know what is killing. Her fear are three point. Five million of us and we shouldn't have had, but we work hiding from society. We were hiding each other one of the lucky ones, I have been approved for treatment and about halfway through with its working, but the odds, Certainly in my favor, if it
I'm gonna be sad. I might be devastated but I don't have to go through that four fifths, in the years. I was too high and low, but now, even if this disease does call me I gotta go out yelling and laugh you crying with my friends and I think, cool community and that my is actually living. Thank you that was John she's, the best selling author work. One reason has been featured in the New York Times and the Washington Post amongst many others.
We ve taken you EAST West, north and south to hear stories. They didn't quite go. The way he went was expecting, but, as expected, the all headman Mr Touch, thus in one way or another, and that is the beauty of storytelling. It reminds us that we have much more in common than we do differences that we're all Swatch isn't quilt and what a talent storyteller will do is weave the narrative thread. It brings us all together. They makes us all one thing, that's it, but this episode of the more radio Howard, I hope one day you find yourself in a bar in a forest in Saint Croix sitting next to a pig. That's it with this. But so do the more radio our we hope. You'll join us next time and that's the story from them all.
This episode of the moth radio, our was produced by me, J, Alison and Catherine Burns make bowls and John Good who also hosted this shell co producer, Vicki, Merrick and associate producer Emily camps. Stories were directed by Maggie, see no and Jody Power there, The moths leadership team include Sarah Haber men, Sarah Austin Genetic Jennifer, Hickson, Kate tellers. Jennifer Birmingham, Marina clutching Suzanne, rust, Brandon Grant Inga, go: Thou Ski Sarah, Jane Johnson and all cause more story. Our true is remembered firm by the storytellers earthy music is by the drift Taking this shower from sunny Roland a HAWK Hacksaw and the hum hunger ensemble looted, sessions v, see
I learned more Gaia the matter. Lantern and Andrew Bird ours produced with funds from the national endowment for the arts. Radio hours produced by atlantic public media and woods whole Massachusetts and presented by Pierre for more about our podcast for information on pitching us, your own story and everything else, good or website the moth dot org
Transcript generated on 2022-03-12.